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Everything posted by AlexFrancis

  1. Hi, Anyone UK based, that has had the WB by sending a blood sample from the UK. My problem seems to be finding a lab that will spin blood for me! Thanks
  2. Hi TBarr, Yes I read your story and I am glad you are in a better place. I would love to focus and convince myself that I don't have GHSV, but 20 years on and having put it to bed for almost a decade I can't reconcile what I see and feel every day as being psychosomatic. I have also passed this on to my partner, which reinforces my view of what is really going on. Diagnosis of GSHV is problematic in the absence of lesions that can be swabbed. And I feel that that is the reason why I am in this nightmare, not the fact that I don't have it. If I was US based I would have the WB, being in the UK it is somewhat harder to organise.
  3. Elysium17, You are not unique as I feel as I am in your situation. However, my condition has been for almost 20 years. I forget the exact timeline of all my pain but like you I see a visual indication of this problem and have consistent nerve pain in my legs, genital soreness. I am going to add that I have never been diagnosed, but I know I was infected as my situation is unique which is pointless to discuss here. All 3 approved antiviral drugs had no effect on me. My post is not to depress you but highlight that what you are being told by doctors, that it is in your mind, isn't necessarily correct. It is your body and you understand what is going on. I have had a relatively good past 10 years, and my life was back to normal, HSV was in the back of my mind all the time but I wasn't in pain. I have had continual symptoms since January and hence looking for help again, which for me is to get closure and a positive diagnosis. Hang in there.. life will get better,
  4. Not sure if you read my story a few posts below this. But having not had a diagnosis and my problems starting immediately (within 1 day of the event, peaking with intense pain at day 4) after a very unique single event that did not involve sex, oral or other (which I don't want to discuss). I am as certain as I can be I have GHSV. I don't know whether it is type 1 or 2. In the first 4 or so years I had probably 40 doctor appointments, seeing maybe over 10 different doctors, I found one understanding doctor and had many appointments with her. But what I learnt from my experience is that detection and diagnosis of infection/virus/disease is not as clear cut as people or the medical profession would make out. And most of the 10 doctors knew very little about GHSV and again most gave factually incorrect information to me. You said you were tested for all STI, that may be the case, but it doesn't mean that they returned correct results. Maybe one was a false negative and you indeed had an infection other than HSV. Also you had symptoms 2 months after you broke up. My experience was intense pain 4 days after exposure, but feeling symptoms within 1 day. I believe if you were infected with GHSV you would have experienced the symptoms within days, not months, especially as you were hospitalised. Serology testing returning positive for HSV 1 means nothing, 70% of the population are positive by the age of 40.
  5. Robmat, this is my take on the subject. HSV for some, it seems a massive deal, for others it's barely a thought. Those like myself, reach out to the internet and we are presented with horror story after horror story and it reinforces our own belief on what we are experiencing. I am guilty of this same fact. No one posts to forums like this to say HSV has been insignificant to them. You can look in an outsider and think what!! That is all in his/her head but you aren't able to apply the same logic to your own situation. But looking at facts. HSV1 diagnosis is most likely to be oral herpes, even if you don't get cold cores. So you are in a situation whereby there is uncertainty in your diagnosis and this probably causes you to think about every sensation in your genitals, you end up in a destructive cyclic loop. I think if you were truly GHSV1 positive, you would see something visual, as opposed to just having a tingling/itching feeling. From what you have posted if I were to place a bet, I would say what you are experiencing is not GHSV and is more psychosomatic.
  6. How were you tested? A single test, without ever having symptoms I would discount. That is the problem with this virus, unless you have classical symptoms that can be swabbed and HSV virus grown from that swab, testing seems so unreliable.
  7. Hi, Looking for help again after having buried this disease many years ago. I will keep this post brief as my story is for another post. I was infected 20 years ago next year. But I still do not have a positive diagnosis. There is a singular event that enables me to understand very clearly why I know I was infected. And another major factor is that I passed this onto my partner, 1 year after I was infected, I am still with her and she has had problems over the same period. (again undiagnosed) My question is related to trying to understand why over 19 years my 3 blood tests have been negative. All have been IgG type specific, the first one maybe 6 months after infection, the second 2 years and the most recent 19 years. My wife's one and only blood test maybe 6 months post infection. I like a lot of others had a bad time. Maybe the first 5 years almost constant outbreaks (no blisters) the last 10 years it eased up, possibly 1 detectable (feeling pain) outbreak a year and of course I was able to bury mentally the idea of being infected with GHSV11. But since January of this year constant outbreaks with pain. In the early days I did 1000's of hours of research and my story is like a lot of those that post here. I am UK based so the WB is not really an option. PCR swabbing was not an option 20 years ago. And lockdown means walk in clinics are closed. Anyway to my point, I have never found an answer to the question about specificity of blood test being related to a strain of the virus or the infected persons response to the virus. So for example will my blood tests and those of my partner always be negative (excluding WB) as we are infected with a strain that does not elicit the immune response and the specific protein that standard IgG serology tests detect? Any information greatly appreciated.
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